Communication with patients and families

umcRN, BSN, RN · Aug 20, 2012

Funny you should write this post as I have been dealing with this exact situation for the past 5 shifts! I have a patient who is a LOT sicker than he may appear on initial glance. He is in severe heart failure (EF = 18%). Every morning on rounds the docs explain to parents that this "takes time to heal". I finally had to go to the doctor and insist that a family meeting be set up for this week and the parents given a good explanation, because they are the type of people who need all the details and need a plan. The issue is when the doctors and nurses hear "slow and steady" and "time" we think on terms of months (for the particular condition this baby has) while to the parents a long time in the hospital is two to three weeks, which is what we are nearing on now.

Yes he had his surgery (which hopefully was not too late), and yes he's breathing on his own and yes the "critical" period is over but the family needs to understand that now we enter a watch and wait mode, wait for his heart to improve which could take months and the parents need to know the plan b, if his heart does not improve.

I think I finally got it through to the doctors yesterday (I may have had long, firm conversations with the ICU attending, fellow and cardiology fellow) and I think they finally understand what I am saying. I hope the meeting happens this week for the baby & families sake.

Great article to read. Besides this situation I have seen SO many situations in pediatrics where the families just do not "get" it. I had a patient once with hypoplastic left heart and the days before her surgery we were trying to prepare the mother for what she would look like after surgery (open chest, likely on ECMO because she had been pretty sick prior to surgery) and her mother just kept saying over and over that she got it, that she knew "everything" about HLHS, but the way she acted demonstrated very differently, that she did not get it, even though we were trying to get her to understand. And another patient I had once, sick little guy, had been intubated for months, at one point during my shift his mom asked me about something ( I forget what) and part of my response included something about "when babies are sick like this" and his mom just looked at me, total deer in headlights, and asked "what do you mean, is he sick?". I had NO IDEA how to respond. Umm yes, your 5 month old has a pretty severe heart defect and has been on a ventilator for that entire 5 months, has had two open heart surgeries and will probably need more...I mean unless most babies you know live on ventilators... it amazes me sometimes :uhoh3:

Another problem comes when we, as nurses, know these things (baby is really sick, might need surgery, a transplant, ecmo, whatever) but it's not our place to tell those kinds of things to parents and it's in those situations when bedside nurses have to really advocate for the parents and the patient and get the doctors to understand how the family is perceiving their current situation, and encourage them to sit down with the families and talk in greater length and detail than we are able to do on morning rounds.

TheCommuter, BSN, RN · Aug 20, 2012

The citizens of this country desperately need to have a national conversation regarding healthcare topics such as illness, disability, aging, and end-of-life issues. However, I really do not see this taking place anytime soon due to our polarized political landscape.

I recall one physician writing an article. He wrote that we are a nation of wimps. Based on my personal observations, I agree with him. People do not want to be bothered with nonthreatening issues such as itching. People expect a pain level of 0 (zero) while giving birth or during the first 24 to 48 hours after major surgery. In general, I find some expectations to be unrealistic.

ckh23, BSN, RN · Aug 20, 2012

If it were possible, the first step would be to cancel all of the TV medical shows like Grey's Anatomy and the next step would be to limit the amount of BS floating around out there on the internet.

ckh23, BSN, RN · Aug 20, 2012

I recall one physician writing an article. He wrote that we are a nation of wimps.

Sad, but very true.

umcRN, BSN, RN · Aug 20, 2012

Sad, but very true.

I commented on one feature of the article...when the way families understand things may differ from the care team. The other point of the article I can also comment on. I agree in part that we are a nation of wimps, one of the reasons I prefer working with children is that they cope with pain, discomfort and being sick SO much better than adults do. I will however agree that there are times when a family or patient is told they are "fine" when they are not.

The little guy I describe above, in heart failure? For three months his parents took him to doctor after doctor, he even had SURGERY for something completely unrelated, complete with a hospital stay, and yet his diagnosis was not found. The night an ER doc finally took a good look and got an echo he was immediately flown to the hospital I work at and in emergent open heart surgery at 10pm that night. As I said before, it is unclear whether he will regain the heart function he lost.

I even had my own experience where I saw my primary care doctor three times, my eye doctor and even my dentist for persistent headaches, vomiting and vision problems. From each one I was told I had migraines. As a nurse it took me a very long time to even go to the doctor for this because I felt like I was overreacting. That being said by the time I finally got myself to a neurologist who discovered a massive brain tumor, my intracranial pressure was so high and I was at such a high risk for stroke, brain herniation, seizures and coma that I was immediately admitted to an ICU and had surgery the next day. I was 24 years old at the time so no one suspected it but turns out I was that 1 in 1000 who will actually have something seriously wrong when everyone else thought I was overreacting

It's tough though because I do believe that as a whole, our population overreacts to the smallest thing, we are always out there "Web-MD-ing" things and the public]"always" knows better than the health care provider when really, most just want an easy fix or really, unnecessary treatment. We have to be aware however that there are situations, like the two I describe above, and make sure that something serious isn't missed.

SwansonRN · Aug 20, 2012

I've found that inconsistency between care providers is a big culprit. I work in the ICU. Some physicians are realistic, some are more on the ideal side. Families in crisis will hold on to the slightest detail, the smallest glint of hope that someone can give them. If one provider mentions an improvement of any kind, the family is not going to appreciate the next person coming in to talk to them about end of life decisions. I always put in an effort NOT to give my patients' families false hope because I don't think that's fair for the patient or for them, but I know that is not everyone's philosophy.

Along the lines of end of life care I think a major problem is the way we phrase these conversations. "If your heart stops, do you want us to try and start it again?" That's a hard question to say no to! They don't realize that this means slamming the patient's chest again and again, at best, return to the same poor quality of life. "Do you think pressors are appropriate?" How is the average person going to answer that question when most have a very vague idea of what pressors are.

Just some of my thoughts. Great post and interesting article.

Susie2310 · Aug 20, 2012

My personal experience as a family member (I am an RN) in regard to gaps in perception of one's family member's medical condition, has been that lack of communication on the part of the health care provider (not the nurse) is the major cause of the problem. A contributing factor on one particular occasion has been a lengthy work-up by a non-MD provider - we would have strongly preferred an MD (which I believe could have been done more efficiently, and slowed down my family member's admission to hospital when his diagnosis required prompt care). When the provider finally appeared to tell us the diagnosis they had no time to explain anything because my acutely ill family member needed to be rushed over to the hospital right now to be admitted. This, while the smiling provider thrusts paperwork in my hand that she does not in any way explain to us, which I read and learn about my family member's diagnosis, etc. This is a single example, but I have experienced similar situations with other family members. So I can see how these gaps in understanding happen, especially with patients/family members who have no medical/nursing training.

As to the solutions, I would have to say a model of care that does not appear to currently exist; where patients are seen by a doctor in a timely manner; where doctors/other providers make time to give explanations regarding diagnosis and treatment at the patient/family member's level of understanding; where doctors/other providers make more time to teach patients about their illnesses in primary care settings. I think all of these things would contribute to the patient/family member having a more accurate perception of their/their family member's medical condition when they present for medical care and are either given minor care, or the converse. Patients and family members are pretty much left to their own devices to research their medical problems; no wonder they often misunderstand their medical conditions.

BrandonLPN, LPN · Aug 21, 2012

Modeling healthcare in the "customer service" model certainly does not help the "wimp factor" any.

And it really is very frustrating that negative outcomes and patient decline is automatically linked to failure on nursing's part in the eyes of many family members. In LTC, I've seen so many daughters raise hell that mom is getting weaker and more disoriented because the aides must not be walking her or the nurses are snowing her. It has *nothing* to do with the fact that mom is a million years old and getting older every day....

If we could communicate a bit more bluntly with family members.... but the customer service angle makes that difficult....

merlee · Aug 21, 2012

My MIL is in a very good LTC facility. She has Pick's dementia, and, truth be told, I thought she would have died by now. but she is still alert and ambulatory. They backed off on one of her psycho-active meds, and she is actually a bit more alert than she was 6 months ago. My hubby took this as meaning she was getting better. Despite the fact that she has been in a facility for 7 years, is totally incontinent, and has no verbal communication, he latched on to this bit of info. I feel like the meanie trying to tell him, over and over, that she is not going to get better.

I myself have diabetes, and I wake up every day EVERY DAY hoping my sugars will be normal, and the whole thing will be a bad dream. I hate it, and everything about it. I hate my CAD, and knowing that I have 4 drug-eluting stents that are now known to be less effective than the plain ones. I hate having sleep apnea, as well, the stupid nose pillows were changing the shape of my nose. So I stopped wearing it.

So the disconnect will always be there.

BTW - using the word 'sick' has different connotations to different people. When your kid is on a ventilator for a while and someone says he is sick maybe the parents are thinking he now has the flu on top of whatever else is going on.

People are afraid to deal with all kinds of things - that new noise the car is making, the ache in their left arm, mom's forgetfulness, dad refusing to shower for weeks on end. We all engage in magical thinking when it makes life easier.

Denial is a strong emotion.

imintrouble, BSN, RN · Aug 21, 2012

Modeling healthcare in the "customer service" model certainly does not help the "wimp factor" any.
And it really is very frustrating that negative outcomes and patient decline is automatically linked to failure on nursing's part in the eyes of many family members. In LTC, I've seen so many daughters raise hell that mom is getting weaker and more disoriented because the aides must not be walking her or the nurses are snowing her. It has *nothing* to do with the fact that mom is a million years old and getting older every day....
If we could communicate a bit more bluntly with family members.... but the customer service angle makes that difficult....

Exactly! If you speak plainly about the 100 year old CHFer with an EJ fraction of 12, you'll be considered "mean". Mean nurses don't = excellent survey scores. If you wimp out, and make the prognosis "nice" the family will latch onto any piece of what you said to support their hope that granny will get better.

Tarabara · Aug 22, 2012

The citizens of this country desperately need to have a national conversation regarding healthcare topics such as illness, disability, aging, and end-of-life issues. However, I really do not see this taking place anytime soon due to our polarized political landscape.
I recall one physician writing an article. He wrote that we are a nation of wimps. Based on my personal observations, I agree with him. People do not want to be bothered with nonthreatening issues such as itching. People expect a pain level of 0 (zero) while giving birth or during the first 24 to 48 hours after major surgery. In general, I find some expectations to be unrealistic.

So true! I recently had several families that were very unrealistic about expectations. One was the family of a guy with end stage liver disease, the docs and palliative care were trying to suggest going on hospice care but the sister/POA said she was not ready for that. They kept ringing the call light every 5 minutes because he "wasnt feeling good". I gave him pain meds, nausea meds, and every comfort measure asked for as well as tried to explain that with end stage liver disease he probably wont "feel good" most of the time. (this was said a lot more sensitively of course). I dont think people understand we cant always make them feel perfect.